A Crownsville family has launched a nationwide search for a bone-marrow donor who can give their 10-year-old daughter the best chance at beating a rare leukemia.
Doctors at Johns Hopkins Hospital diagnosed Nianque Early Dec. 3, after she'd run a fever for several weeks.
The fifth-grader, daughter of computer operator Doug Early and artist Lynn Early, travels to Hopkins for chemotherapy, sometimes several times a week.
The disease has gone into remission. But for Nianque to survive a form of leukemia rarely found in children, doctors have recommended a bone-marrow transplant as soon as possible.
LynnEarly, who teaches Nianque and daughters Minka, 9, and Wachipi, 7, at home, took Nianque for tests after Early, the girls and her 12-year-old son, Christian, got the flu last winter.
"She didn't get as sick as we did," Early said. "She ran a fever and was up and down withit. But she never had any other symptoms of being sick."
The restof the family recovered, but the child ran a fever that refused to break.
"It got really scary," her mother said. "I kind of suspected what she had. That's why we were such nervous wrecks waiting to find out. That's what I was afraid it was."
When tests discounted a possibility of Lyme disease or mononucleosis, doctors sent Nianque to Hopkins. The initial diagnosis showed a curable form of leukemia. Butfurther chromosome tests showed a rarer, incurable form of the disease. Nianque stayed in the hospital three weeks because of low blood counts.
"She could get totally cured and have no problems the rest of her life, or she may not live through it," Early said.
Nianque has handled her illness well. "She's old enough to be responsible about taking her medication," she said. "She's young enough that she understands, but she's not afraid."
The family has started the costlyprocess of finding a donor whose tissue type matches Nianque's. Noneof the Early children match. An unrelated donor has a one in 20,000 chance of matching.
Since a donation from a brother or sister would give Nianque the best chance of survival, the Earlys are planing totry to have a fifth child. Doctors can perform transplants using theplacenta from a newborn baby without threatening that child's health.
Even if the couple has another baby, chances are only one in four that the newborn would match. If Nianque relapses, doctors would turn to the second-best option, a transplant from an unrelated marrow donor.
The National Bone Marrow Donor Program, which keeps a registry of more than 300,000 names, has found nine potential donors. But all must undergo further tests. The family's health insurance won't cover the $10,000 cost.
The Earlys have applied for assistance through the Illinois-based National Children's Cancer Society. So far, help has come from the Earlys' extended family and members of their parish at the Evangelical Presbyterian Church of Annapolis. The church plans to set up a fund in Nianque's name.
Last week, the church scheduled a donor drive at which 114 people gave blood samples to enter into the registry. They will be available to Nianque or to any patientneeding a transplant.
Nianque's chances will improve as more people register as donors. But money is short, said Lois Hoffer, coordinator for unrelated bone-marrow donors at the Johns Hopkins Hemapheresis Center.
It costs $75 to test one person; the church drive ate upthe remainder of a grant the Hopkins center got through the nationaldonor program, Hoffer said.
The national program will give matching grants to families willing to recruit donors and raise money, Hoffer said. The Earlys hope to raise money for another donor drive. For each $75 raised, two potential donors could be tested, Hoffer said.
In Nianque's case, the best match would come from someone with a mixture of German, Irish and Cherokee blood. Finding a registry donor with a Cherokee background could prove a stumbling block, Hoffer said.
If the national program finds a donor, insurance would cover the cost of a transplant. It would not cover surgery for a donor, so the family hopes to raise money for that as well.
If no donor is found, doctors would consider an autologous transplant, in which they remove the bone marrow, rid it of the cancer and replace the marrow. The procedure does not cure the disease; it merely buys the patient time.Nor is it covered by health insurance because of its experimental status.
The young patient, an avid Orioles fan who likes to paint, play soccer and collect baseball cards, has handled her ordeal well, her mother says.
"Better than me," Early said. "She's the best patient. She lets them poke her and she giggles though the tests. She's pretty laid-back about it."
Anyone wishing to help Nianque find a donor can make a contribution in her name to the E.P. Church -- Deacon's Fund and send it to the Evangelical Presbyterian Church, 710 Ridgely Ave., Annapolis, Md. 21401, or contact Page Putnam at 956-3703.
Anyone wishing to become a bone-marrow donor should contact Hoffer at 955-6347.